Last winter, I attended a support group via Zoom for parents whose kids have been diagnosed with DMG/DIPG. One of the good things about it was that I didn't have to explain the reality of our situation to anyone. Everyone already knew what we are dealing with.
My husband attended an in-person support group for parents whose children have cancer. There he met a parent who has a daughter around the same age as ours. Their daughter has gone through four years of treatment for medulloblastoma, a grade IV brain cancer. All brain cancer is awful, truly. But, also, what we wouldn't give to have the hope of five more years. And even in the shared experience of brain cancer, we still have to explain the grief that we feel.
So, a diagnosis-specific support group was really helpful for that reason. But, during the meetings, they asked questions that I didn't feel like I have a real answer for.
When they asked me to talk about who my kid is - truly is - I struggled to find the words and that made me feel like a bad parent. What I mean is I could tell them all about the details of her, but articulating the big picture of her is much harder to put into words, or maybe it's that words like "kind" and "caring" aren't capable of truly capturing a person. She loves drawing and movies; she loves bright colors and being silly. She thought it was funny that every other kid her age has a black backpack and hers is rainbow tie-dye. She tells jokes and memorizes animal facts. She likes making friends and surrounding herself with kind people, but she also doesn't care much about what others think of her. She is a hard worker and the type of person who gets all of her work done on Monday so she can spend the rest of the week doing what she wants. She worries about failing. She is steady and cautious. She is not afraid to tell people what she thinks, if things hurt, if she doesn't want to do something. She likes seeing cool birds in our yard, watching the sunsets with us, and remembers the lyrics to every song she's ever heard. She has a clear sense of justice and right and wrong. I suspect she thinks about more than she is willing to talk to us about.
Still though, as she's gotten older, she's less of an open book that she used to be. While I understand it, the slow closing off of herself is hard to accept because I just want to know everything about her. She still reaches to hold my hand in public. She sits with me on the porch just because. She laughs at my jokes and listens to my advice. But, she asks for privacy. She wants me to leave her room. She rolls her eyes at us. She offers up less information about the daily dramas of her friends. She's slowly pushing me out to make more room for herself I suppose. I don't feel hurt by those actions, but I feel sad about the changes. In particular, I'm sad that the things that used to make her so excited now get met with a shrug and a meh. What happened to that bouncy, rainbow child and when did she become so much more grounded?
But, last weekend my husband and I took the girls to see a Taylor Swift Tribute band, and they were both so excited and so into it. My youngest danced and hammed it up. My oldest emphatically sang all the lyrics to every single song. At one point, she yelled to me "This is great!" And it was. I maybe got a little teary eyed watching them sing together - both because it was so cute and I love their relationship and also from knowing they won't have this forever, cancer or not.
It's a weird place - watching childhood slip away into adolescence and also feeling like I won't get to see the adult she'd become. I'm grieving both ends of a person.
And maybe this is why I struggled to describe who my daughter truly is. How do you put into words someone you know so intimately, whose heartbeat you felt inside your own body, who is now building a cocoon around herself and changing a little every day? How do you describe someone who is becoming more herself and less knowable at the same time? And how do accept that you won't get to know the future versions of this person you love so much?
A Nostalgic Song
Taylor Swift, "I Knew It, I Knew You"
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